"Every little helps" - Jo’s fundraising journey

In Jo O'Callaghan’s case, Complex Regional Pain Syndrome (CRPS) reared its ugly head when she woke up one day in February 2003, with extreme pain and numbness. There was no precipitating injury – she simply woke up one morning with pain. 

It took 10 years before doctors identified that Jo had CRPS and during that time she went through every treatment option there was (along with all their associated side effects).

Jo has since lost a leg to CRPS, which also often makes it too painful to wear a prosthetic limb.

Every time Jo buys a new pair of shoes, she's adding to her pile of redundant right feet. She realised that there must be other people in the same situation and set up the Jo’s Odd Shoes Facebook Group where members can swap or donate spare shoes. The group now has 4.4K members with a variety of chronic pain conditions who not only swap shoes but offer advice and empathy.

Jo has been fundraising for Burning Nights for a few years now and describes how lucky she feels to have a community that she can go to to help her fundraise: “I just want to give back and I’ve just got this great group of people that can donate – even if it’s just £1, it all adds up.”

Jo’s advice to new fundraisers is to: “Start small – don’t aim too high – and if you raise more than the original goal, then well done.” Jo’s most recent fundraiser, held this year, involved selling more than 600 raffle tickets and raffling off a handbag, which raised £650. 

She jokes: “Since I’ve had CRPS I think I’ve gotten a bit mad.” Jo explained that she chose to do a ‘wing walk’ on an airplane. Standing on top of the craft, she describes how she first went up 15,000 ft and then double that to 30,000 ft.

“I would never have done that pre-CRPS or pre-amputation,” Jo says. “I think although we may be in a lot of pain, there is still a human being in there somewhere, and we want to prove ourselves. 

“Although it's not a great deal of money I’m raising, I just feel every little helps. There are so many people who need help out there now and for a group like Burning Nights they need all the extra pennies they can get. If I can raise a few hundred pounds every year I feel like I’m doing my bit for them while they’re helping me.”

Jo hopes the funds she’s raised will help support people living with CRPS who don’t have any friends or family to talk to: “ I’m lucky that I have people around me I can talk to but some people haven’t got anyone so for them to be able to reach out to Burning Nights through a message or a phone call is just amazing,” she says.

Burning Nights CRPS Support is here to give people affected by Complex Regional Pain Syndrome (CRPS) support, confidence and information.

Although we are a small organisation and team, we are here to answer any questions you may have. Whether it’s a question about living with CRPS, caring for someone with the condition, or something else, we're here to help you.

When asked what interests her most about Burning Nights, Jo said: “I’ve been to a few of the meet ups now and it's great to hear everyone’s experiences. Every time I’ve been I’ve met different people and you can talk about symptoms, how you're being helped and things like that.”

Burning Nights hosts monthly support group meetings via Zoom, allowing people affected by Complex Regional Pain Syndrome (CRPS) – including patients, carers, family, and friends – to connect from the comfort of your own home. Book to join the next one through the Burning Nights Events page.

Jo believes the Burning Nights Facebook page is also a great resource of information and conversation for those both newly diagnosed and living with CRPS long term.

She wishes everyone knew how friendly the volunteers at the charity are. “If someone is newly diagnosed and they don’t know where to turn, they should always be told about the Burning Nights website,” Jo says. “They can find out if not all, most likely a lot of the answers they will need to know. And if there’s someone they need to talk to there are contact numbers and emails.”

Jo says she will continue to fundraise for Burning Nights in aid of others living with CRPS. Hurtling along the big zip wire in North Wales comes up when she talks about her future fundraising ideas, so watch this space.

To join Jo and the Odd Shoes community in raising awareness and support for CRPS, visit Jo’s Odd Shoe’s Facebook Group.

It seems Jo’s fundraising is a family affair; her son recently completed the Edinburgh Marathon in support of Burning Nights.

To be inspired by more of the wonderful fundraisers who enable Burning Nights to support those affected by CRPS, please read:

• Tristan’s fundraising supports vital Burning Nights’ counselling services

• 114 kilometres in 5 days: walking the El Camino de Santiago to raise awareness of CRPS

• Fire & Ice Charity Ball brings in nearly £3000 for Burning Nights CRPS Support

If you would like to organise your own fundraising event we have a wealth of fundraising resources on our website to help you. Be sure to let us know what you have planned!